Hazel McHaffie

Disability and Assisted Dying

The topic of a good death just won’t go away, will it?! But this week there’s tangible progress to report.

Currently, as I’m sure you know, assisted dying is banned in all forms throughout the British Isles and carries a potential maximum prison sentence of 14 years. Repeated attempts have been made to legalise assisted suicide, without success, but this week the Isle of Man, a self governing UK Crown dependency, has come a step closer to becoming the first part of our islands to legalise it for terminally ill and mentally competent people. And Scotland is hard on its heels with the formal introduction of a new bill to their parliament on 27 March.

But of course, as ever, these attempts to change long established laws in such a sensitive and nuanced area, prompt strong opposition from some parts of the medical profession, disability and human rights groups, and religious communities, with concerns that it might put pressure on vulnerable people to end their lives for fear of being a financial, emotional, or care burden on others, compromise the ethical standards of the medical profession, and create fear and mistrust among the patient population.

So, I was fascinated by a BBC documentary, Better off Dead?, which devoted an hour to the topic on Tuesday this week (14 May, 9pm). It was written and presented by actor and disability rights activist, Liz Carr, who is herself disabled and in a wheelchair. A recent poll found that 73% of Britons support doctor-assisted suicide for the terminally ill, but Liz and many other disabled people fear their lives will be put at risk if it is legalised. She says:
Too many disabled people will have had the experience of someone, often a complete stranger, telling them, ‘if I was like you, I’d rather be dead’.
But she says with a grin, disabled people are the toughest people out there! To which her friend adds, ‘Cockroaches! Evolved for survival!’ And Liz certainly comes across as a feisty, articulate, and knowledgeable campaigner.

The pandemic cast a bright light on the inequalities in care, and the practice of ‘Do Not Resuscitate’ orders being placed on the medical notes of older or disabled patients, without their consent, also implies a low value is attributed to their lives. This documentary challenges the assumptions behind these actions, and shines a light on the many grey areas in this often one-sided debate. Seen through the eyes of those being discriminated against, it packs a hard punch.

In the course of making the programme, Liz also travelled to Canada to explore the repercussions of some of the most permissive euthanasia laws in the world, laws which include people who are disabled, not just the terminally ill. For me, seeing the illustrated information pack for children explaining what MAID (Medical Assistance in Dying) means in simple language, chilled the blood.

A palliative care specialist drew attention to the paucity of such care, and her cry to protect the vulnerable struck a particularly deep cord when we had this vivid image of assorted people with disabilities in front of us. Why don’t we hear more about the serious underfunding of this service, I wonder? Is this where we should be devoting our energies?

Even if there are to be changes in the UK law – which seems highly probable, they won’t be 100% safe. They can’t be. But the more practical question is: How safe is acceptable?

Back to my pile of books on the subject which I’m ploughing through systematically. But now with this niggle about disabled people’s perspective a much bigger alarm call.

 

 

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